Going Morning all! First let me say to my new comers or people returning here, I am glad you are here. I am a big advocate for caregivers getting the support they so need in some form or another and if you are not comfortable with the previous support group then your new home can be here but and of course there is always a but I am going to ask if the chit chat be moved to the respite area as these sub-categories are really for the "new to LBD", so they can come in here and if need be just type a word and get to the posts they need, My objective is that. I ( have watched this over the past and seen one comment turn into a 5 page answer, sadly a new to LBD poster will not know how to wade through all that. Often new people find it hard to start a new thread for introduction so they just continue in the one that is there and of course part of my job is to find them and welcome them and assist with what they need, either a person seeking a Doctor or specific questions and I always encourage people to go to the area that fits their needs better as there will be more help.

I have been trying to figure out for some time how to get rid of all the off subject posts and once so many get into a thread it is impossible so with this being said, again I am happy that you are all here and welcome your posts and if it is just chatter that's fine just lets keep it in respite area where a thread can be started, even more so for our newest members who all know one another just think how difficult that is someone else trying to fit into an already existing conversation.

As we all know when our Loved ones are newly DX'ed with this horrible illness we are desperate, I know I was there once and that is the main reason behind starting the LBDA forums many yrs ago.

So ladies I say blast away , get your frustrations out just do it in the respite area ! Of course I am only referring to chit chat not actual informative posts.

Sorry for the change of hats for me here but I have to keep this as clean as possible for the newbies, it has nothing to do with me being a member of the caring spouse group as I am only there to catch the people who fall from the loss of their LO and I can welcome them into the after group!

So I am moving the whole thread down to the respite area ,once I think you have all been able to see my note to you, normally I would have written privately but this really is for several posters, if there are comments please PM me and I will try to address them the best I can!

I wish you all well !

PS On another note: The chat room:Maybe one of you can have a specific time to be there, I know it is hard as Pat mentioned with care giving and I know the time difference is also a problem but if anyone has any ideas please pass them along so we can see how to fix those issues

_________________Irene Selak

Sat Dec 18, 2010 9:02 am

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: Returning to Group

I'm sorry, Irene. I guess I misunderstood the purpose of the 'Respite' section as relating to topics not connected to Lewy, as our 'Diet and Exercise' threads, e.g. [The topic explanation reads: This area is established for those who wish to talk about people/things (pets, children, etc.) away from LBD.] So, you're suggesting that, if I'm discussing my husband's respite week in the nursing home, for example, I should put that in the Respite section? And if we're venting about Lewy behavior should that also go into the Respite section? I'm just trying to clarify things, please bear with me.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Sat Dec 18, 2010 9:16 am

Leone

Joined: Wed Oct 28, 2009 11:53 amPosts: 969Location: Ocala, FL

Re: Returning to Group

I also wondered, Irene, if you have the option of removing those postings that do not contain information about Lewy? After a bit of time, those become meaningless anyhow.

I agree that we are here to share our experience and questions about Lewy. There are times when our frustration is ALL about Lewy.

Leone, That's a good question , the problem is once we start removing some it really becomes confusing to the reader, but we have certainly talked about it !

Frustrations are a big issue dealing with lewy and they certainly need to be vented, no one argument from me on that!

_________________Irene Selak

Sat Dec 18, 2010 10:17 am

BernieD

Joined: Thu Dec 02, 2010 1:44 amPosts: 93

Re: Returning to Group

I personally loved the other site, it is sad that a few mean spirited people drove me away although I am still lurking. This is in hopes of receiving some valuable info regarding LBD. The other site reminds me of my highschool days with sharp tongued teens. So happy to be here. Thank you for your warm welcome. Bernie

Sat Dec 18, 2010 10:28 am

irene selak

Joined: Sat Jan 03, 2009 2:59 pmPosts: 1978

Re: Returning to Group

Pat, I am not suggesting that at all, Of course all Lewy topics are welcome here, I guess bottom line is I don't want it to become a chat area where newbies find it hard to get through the posts. If you are talking,venting or discussing NH issues of course that is part of LBD and the issues that go with it because that is things others will look to read also when they are dealing with the same issues, perhaps we can set up a chat area here in the respite area and I am looking imto that.

Please don't miss- read me on this if you want to discuss NH issues than by all means post in the area best fitting and that goes for any other topic.

I see 2 goals here one being a place to get information and the other being a place to post information !

_________________Irene Selak

Sat Dec 18, 2010 10:29 am

IreneM

Joined: Fri Dec 17, 2010 12:23 pmPosts: 5

Re: Returning to Group

Thanks Pat, Bernie, Robin, Leone, Irene for the welcome back. I confess to having difficulty in getting used to the workings of the forum but I will forge on. IreneM

Thanks, Irene...I often post in a topic I consider appropriate but end up spinning the thread into a long, ongoing chat. I personally find this comforting, getting the feedback of my fellow forum-ites but I can see where it can get confusing and hard to wade through. And please, redirect me when I'm going off track. I'm not playing with a full deck these days.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Sat Dec 18, 2010 10:38 am

Leone

Joined: Wed Oct 28, 2009 11:53 amPosts: 969Location: Ocala, FL

Re: Returning to Group - posting information

For me, hearing others occasionally rant is sometimes extremely valuable information! Dale isn't as far along as many in this group. I learn a great deal from those who complain about the Lewy problems they are having. Experience is a great teacher and often MAKES a great teacher! First instance, having Pat give us a first person experience with a nursing home is a real plus!

The other forum that we all liked, simply had a running listing of comments, by date. I found that I could simply pick up where I had left off the day before and read what people were writing. What I had previously read had subject line in red, what was unread was blue. It was like being at a party and circulating the room ... lots of conversations going on at once. Eventually you returned to the thread you were looking for...if anyone else was talking about it at that time. Maybe we need a list entitled something like RAMBLING THOUGHTS....and we can go there for venting. In fact I am going to start it.

Sat Dec 18, 2010 11:17 am

Leone

Joined: Wed Oct 28, 2009 11:53 amPosts: 969Location: Ocala, FL

Re: Returning to Group = the 'view new posts' option

The 'view new posts' serves me as the point where I go immediately in order to discover what has been added to the conversation. I always pick up where I left off. The little red marks tell me what I have not yet read.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Sat Dec 18, 2010 12:18 pm

nandel8

Joined: Sat Jul 31, 2010 5:28 pmPosts: 317

Re: Returning to Group

So do I. But, maybe we need a special venting post...caregiver frustrations...or something like that. Actually the way it has been works well for me....the respite section seems an odd place for it, but if Irene wants it there, I started a post. I can see from your comments that you probably feel there isn't a need for a new post and if so, it will die away. Just an experiemnt. I am not tied to it. Nan

Sat Dec 18, 2010 12:39 pm

irene selak

Joined: Sat Jan 03, 2009 2:59 pmPosts: 1978

Re: Returning to Group

Ok as promised I would be looking into this! A new area has been created for our chit-chat and it is an area that can be used as you wish! I do really care about our forum members and I want everyone to find their comfortable spot here ! Have a great day everyone!

_________________Irene Selak

Sat Dec 18, 2010 2:13 pm

IreneM

Joined: Fri Dec 17, 2010 12:23 pmPosts: 5

Re: Returning to Group

Hi Robin, Thanks for the welcome back...it's been a while. And, yes, I do remember Eric...I wonder what happened to him. Sadly, life in the Caringspouses Group got a little unfriendly. Yes, I left Italy in April of 2009 because of Lewy....I thought I would be better off here. I don't know if I am but here I am. I have had many collateral issues and it all weighs heavy, but hopefully, sanity will reign. Looking forward to figuring out this site...I find it confusing or perhaps it is my head that is not screwed on properly...whatever I'm working on it.

You cannot post new topics in this forumYou cannot reply to topics in this forumYou cannot edit your posts in this forumYou cannot delete your posts in this forumYou cannot post attachments in this forum